This has been a rough couple of days. I don't even have the strength right now to write this as a blog, so I'm just posting it. I have to take Sid tomorrow for an abdominal CT scan - not going into detail now - will wait for results. Anyway, he has to drink some really disgusting liquid (like 3 quarts of it) at various times tomorrow before the scan. He was complaining about it, and I told him not to make a big deal out of it - after all, I had to drink gallons of the stuff for CT scan after CT scan after CT scan every few months for 2 years after my major abdominal surgery. One of the times he was with me, he kept telling me to stop sipping - CHUG IT. Yeah, that was because he hadn't tasted the vile stuff.
Anyway, he looked at me completely blank, and had no idea of what I was talking about. No memory of the most frightening time in our lives, when I endured MRI's, CT scans, biopsies, a 3 month surgical infection, 2 years of joint pain, and puzzlement by specialists who were convinced I had bone cancer. He sobbed with relief when the doctors told us that I wasn't going to die. He DIDN'T REMEMBER IT! I was stunned. Absolutely stunned. I am used to his short term memory being non-existent, but his long term has been very good so far. The medical scare I was referencing was between 2000 and 2002. Right before he started exhibiting memory problems.
I got a little preview of how I will feel when he starts losing all of our history together. It is frightening. If the person who shared 40 years of history with you does not remember it, it's almost like that part of your life is missing.
Yes, joang, it is so hard as I look at my husband of over 50 years and know that he has no memory whatsoever of who I am. It is almost unreal to think about. I remember about 4 years after he was diagnosed we went to visit a neighbor who lived next to us at one time. The neighbor still lived next door to the house where we raised our daughter, as we drove by it I pointed to it and said it still looks the same, he did not even remember us ever living there. That was really the first time I realized how much he had forgotten, somewhat like this is probably the first time it has really hit you and still hard to understand. I feel your pain.
Yeah. Whooomf. (That's one more huge pile of snow avalanching off the roof and hitting you on the head.) It's a fragile set of organs we're depending on when we rely on another person.
Joan, Did you get Sid to drink all of the "Gunk"? I hope everything turns out good for you.
DH did not even remember having bi-pass surgery. I remember during his recovery the day after that surgery when he started seeing bugs everywhere. That was when I saw how much he trusted me. He wouldn't eat because of the bugs on his food. I was able to convince him that he could eat something because I made sure there were no bugs on it.
When he started forgetting me, it dawned on me that he thought he was much younger and we hadn't even met at that time of his life, so why would he know who I was? He changed age everyday. He could be 30, or 17 or any other age that particular day. One morning I was changing him and telling him I happy I was that he was being so good. He looked up at me and said: "Well, I am 4 years old you know." I told him he was a very big boy for being 4.
I know how bad it feels when they know longer remember your history together. I could cry all the time, but that would not allow me to keep going. I just wonder how to get through this.
Imohr* Our bug episode took place in 2001 right at the beginning of our journey. Dh's was a result of a pain med they had him on and the bugs dissappeared when the med was stopped. The only thing my husband ever saw was his mother, a little boy, and "those guys". He never even mentioned these people for the last six months. What I found funny was that he never saw or mentioned his dad until right at the end. He only mentioned him one time.
Joan, this comes and goes, or at least it did with us. For months my husband didn't know my name but knew who I was. My husband talked to his mother alot (with what few words he had left) over the last few weeks, he would point at her like she was there. He may suddenly remember everything again. We were amazed at the memory coming and going. I wouldn't put to much in this memory lapse at the moment, it may just be due to his being sick.
A book was given to me yesterday. It says "The contents may be used in any way to help or comfort those who are caregivers." An excerpt from Journal of a Caregiver, Charles H. Morris:
The wind and waves are against me. I feel I am making progress in discovering ways to help Erica then the wind and waves of Alzheimer's slaps me back. The disease is like the waves of the sea. It never stops. There are a few days when the waves gently nudge the shore of reality. There are days when the "surf is up" and it roars. It crashes! It froths and erodes! Shoved by a hurrican force it crumbles old and dear foundations! It uproots sturdy trees of relationships! The undertow leaves me staggering and grasping to be able to stand - to be able to move forward. But the winds and waves are against me. This is the ugliest of diseases - it is the worst. It is like going through the grief process over and over again with no end in sight. Just as you begin to adjust to one part of losing them, and can rejoice in what is left, the process starts all over again.
Mr. Morris states that having made contact with others in the same position "made it possible to walk this darkened way with the knowledge that I am not alone." This is one way he found a source of strength. I think that is what helps most people on this site. Others who understand.
Hope Sid's test results are o.k. Joan. Sending you a big hug.
Joan, My husband doesn't remember anything about his surgery three years ago, not even a day. He doesn't remember my major surgery a year ago. He had a very difficult recovery after his heart surgery, with hallucinations in intensive care, terrible hallucinations. At the time he had not been diagnosed with dementia and when I didn't say I could see all the things he was seeing he became very angry at him. At the time, my family and I questioned the doctors about this and every one of them said this was not an abnormal thing after major surgery. One and a half years later he was diagnosed with his current disease.
My husband asked me last night, if we met before or after he went in the service. He's 20 yrs older than me and he was talking about ww2. I told him I wasn't born yet when he went in the service. He didn't much like that. He just keeps asking me to tell him about his life, when we met, etc. He's afraid he might have done something he needs to make amends for. (well haven't we all) it's just a killer. Kitty, thanks for sharing.
Bev, my husband had rotator cuff surgery a month before he was diagnosed. It was outpatient surgery. Well, if I had known how he would react to the surgery and everything, I would have insisted he be kept in the hospital at least overnight. I knew he was having memory problems then and I knew they were very bad - just had no clue how that would affect him. Later I realized that he had had a minor hernia fixed a couple of years previous to that and had similar symptoms just not so strong.
Joan, it really is a knife in the gut when you realize how much they have forgotten. I used to try and handle it as a glimpse of what the future will bring.
lomhr---my dh saw bugs early on in this AD journey. Dr. changed his anxiety/depression meds and all hallucinations disappeared! No bugs, no little armies of stick men and no floating strings--gone, poof! It sure was a wild ride during that period. He is probably stage 6 now, calmer and sometimes he laughs about it when he recalls those visions.
My DH saw little spaceships after the surgery and people he and I had had no contact with for years. He was fine for a year after his surgery and then a year after that he was seeing things in the yard and in his bedroom, but he said they didn't scare him! I was more frightened than he was. After that he was diagnosed with Lewy body disease, now FTD. Who knows what next month's doctor visit will show.
My DH doesn't remember our 50th wedding anniversary, even after I show him pictures taken at our reception. He also doesn't remember his surgeries. Thank goodness he still knows me and our children. He's beginning to get our extended family mixed up though. I don't know what I would do without this site. Having others who are experiencing the same things and who understands our heartache does help. Joan, I hope Sid does well with his tests and drinking that horrible stuff.
Thank you - we'll probably hear about the tests on Monday.
I wasn't sure if this long term memory thing was a fluke, because he is stressed over his health, but I'm afraid it really is another downturn. It happened again tonight. Our friends are going to see a movie tomorrow starring an actor Sid and I have been boycotting for years, and we have had many conversations about it in the last 5 years or so. When I told him I didn't want to see the movie, and the reason why, he was clueless. He had no idea what I was talking about or that those conversations ever took place.
So when you and others tell me stories about your spouse not remembering your wedding or other major events in your lives, I am beginning to understand what a terrible void that leaves. The last time I checked, he did remember where our wedding was held. I am afraid to even ask again.
When my DH didn't remember his army injury (he was blinded in WW2) that really scared me. I asked our neuro about it, because i thought it was short term memory they lose, and he explained that it's memory. 60 yrs can be considered short term when a man is 80. that was 3 or 4 yrs ago, at least. the long term comes and goes, mostly goes. It's part of the disease track. Of course you were upset. You can imagine how I felt when I realized he didn't remember being blinded, and then after his sight returned all the surgeries and treatment he had to keep his sight. how can you forget that??? It's a crazy disease.
I find that my hb is forgetting some of the past, not just recent history too. Which is surprising since he is still in the earlier stages compared to many here. But he did get 21 on the MMSE which meant the doctor could classify him as moderate to get the namenda.
Here we go again - incident #3 in as many days. Now he is really scaring me. We were sitting in the den watching the news, and at 6:30, he switched to the Super Bowl. I said that was my cue to go do some website work.
He seemed surprised and asked me - "Aren't you going to watch the Super Bowl?" We have been married for 39 1/2 years. I hate football. (My apologies to all the football fans out there) He's never seen me watch a football game, except a few minutes here and there when the Patriots were in it. I am a baseball and basketball girl, and he knows it. Knew it.
These "long term memory" lapses are worse than the loss of the short term memory. As I said in another post, we are losing our history together. It hurts more than I could have imagined. I have not cried in a long time, as I have adjusted to the situation as best I could, but I am crying now. Over a stupid football remark. But it goes so much deeper than that.
My rude awakening came when my DH had asked why our son had not come to see us, he said he was going to disown him and was really angry with him. I was stunned and shocked to say the least. Our 18 year old son had died in a car accident 6 years earlier and I told him that. I felt like I had been stabbed in the heart and was going to die!!! Then it got even worse, he became irate with me for not telling him and for not letting him go to his funeral, "how could you be so mean" was his words. I went into a panic attack and couldn't breathe. How could he forget the worst days of our life? After that, I never expected him to have a memory of anything. I knew I was alone then, and I would never be able to discuss anything with him again.
My heart breaks for you Joan and all the others in the same situation. I know I will be there one day and I don't even like to think about it BUT, we do have to think about it, don't we?
My DH is still very early stage so I keep watch over all of you and say prayers b/c I will be there too.
I agree, Bluedaze. The short term memory is frustrating, to say the least, but when the long term memory starts to go, boy do we need this support group! Sometimes I look at him is disbelief and think...he surely couldn't have forgotten that.
Joyce,I can't even imagine the hurt you've been through and now it's like going through it all over again. ((((HUGS))))
Joyce - My heart goes out to you. I lost a grandchild and it was horrible, so I can imagine what you went through then and are going through now that you don't have your husband to comfort you. Mine is beginning to lose long-term memory as well. He remembers things way, way back, like when he was a teenager, but not those, say, a few years ago. It's going little by little.
Joyce, I know what it's like to lose a son. We lost our only son just short of his 8th birthday. I don't know if dh remembered him at the end, but after he died I found a letter he had written after his diagnosis. In the letter he told me how much he loved me and thanked me for giving him his great children. He ended the letter by saying "If I deserve it, maybe I will see Stephen when I get there". He never mentioned our son but he did see and talk to a young boy the last couple of years. I tried asking him what the young boy looked like but he could never tell me.
oh Joan I really feel for you and so relate. I think our husbands are nearly in same stage or close. Lately I've written that DH seems to be doing so well but I get these rude awakenings like tonight when I ask a question or make a comment much like your "superbowl" one and get a vacant response from him. He tries to cover if it's clear he is "missing" something. I find myself just wanting to go along with pretending as much as I can as facing the truth is just much too painful and I can't imagine how I will handle it when there can be no more pretending.
Joan,I am so sorry... It hurts so much. My DH, I don't know what stage this is, there are many but I'll go over all the things we plan, carefully so that he WILL remember, or use to, Now, in the next minute,he'll declare he knew nothing about it and that I lied or otherwise kept secrets. We are all , fast becoming blubbering idiots... Sorry, but the real truth is, I don't know if he's better off in his state of mind or me, watching the whole thing unfold and loosing grip myself...Hang in there, all of you... You've given me such comfort reading your situations and solutions...Thanks ..
((Joan)) My heart aches for you. When we realize our loved ones are losing there long term memory too, it is a hurt too deep for words. It is bad enough we are losing them, but then... we realize we are losing part of us as well. I have been dealing with this for forever it seems. It does get a bit easier in that you are not as shocked. But, each new loss still stings badly.
I understand you not wanting to ask if he remembers your wedding..... For the most part I have learned to try to accept and love Lynn for who he is now. But there are times when I find I do still torture myself. The need to know if he remembers me, remembers anything about our lives together, some times drives me to ask questions. Most of the time I have to turn away so he can't see the tears in my eyes when he doesn't know or recall something vital to who we are, or, who we were.....
The last time I needed to know if he remembered my name, or if I was his wife. I asked "who am I". With no hesitation, he said.. "you are my everything!" He couldn't recall my name, and I am not sure if he even understands what a wife is... but he still knew I was important to him. And, he still loved me the best he is able to now. I can't ask for more than that! *sigh......I haven't asked again.... I am just so afraid of his reply. I am not in denial. It is more, the answers hurt so much that I have learned (for the most part) to stop asking.
((Kitty)) I loved that excerpt! Thank you for sharing it with us.
The last time I asked that question, I was his mother. His mother died 20 yrs ago. Now he seems to remember she was here taking care of him, and that she told him she was me. (THat terrible woman) anyway, believe it or not, he remembers that, and keeps asking me how his mother is doing. Now I just tell him I spoke to her and she's fine. (she'd be 106) He constantly asks how we met. that's a big thing with him.
I THINK SHE STILL KNOWS ME? My DW just sits a lot, gets up once in awhile, I think to check on me (does not shadow) and then goes back to sitting on the sofa. I was feeling bad for ignoring her, so I sat down near her and tried to make some small talk (weather etc.) and she threw me for a loop when she asked “where do you live?” I said “I live here with you, I’m your husband.” No response to what I said, she seemed puzzled though. She been very mellow and easy to get along with since she started taking Abilify last August and seems completely comfortable with me and it’s not like she doesn’t know me. I thought I would be ready for this, but I’m not!